My View: Dementia awareness: Love and joy can endure

Friday

May 16, 2014 at 8:00 PM

By Bernice “Bernie” Marinelli

Dementia Awareness Week begins today in the United Kingdom. There isn’t an “awareness week” for dementia in the United States. There should be, and we should begin that discussion because there are so many questions in the Rockford area and the nation about dementia.

Dementia is a collective term used to describe the problems that people with various underlying brain disorders or damage can have with their memory, language and thinking. Alzheimer’s disease is the best-known and most common disorder under the umbrella of dementia.

The message I wish to convey this morning is this: having a dementia still allows for an individual’s ability to experience love and joy.

Research has shown that emotions outlast memories and that individuals with a dementia still experience positive feelings from being with family, friends and loving caregivers.

Research also shows that regular meetings with a loved one with a dementia such as Alzheimer’s can dramatically improve the affected person’s mood and sense of well-being.

This is something we all should take to heart because if we don’t already have a family member affected with a type a dementia, we surely know of someone who is.

These individuals should receive the same level of love, compassion, dignity and respect that we would accord anyone. Life goes on after a diagnosis of dementia, and the person affected continues to have the same need for love and socialization that we all do.

At the organizations I manage, we call this philosophy of care the Anam Cara philosophy.

Anam Cara means “soul friend.”

Engaging in real activities is also important, because these activities create positive, emotional experiences, helping to diminish distress that may lead to challenging behaviors. Socializing also is important for the same reason.

The facts about dementia are startling.

Dementia is a global epidemic, and in the U.S. the number of those affected by a dementia continues to increase dramatically as baby boomers continue to age.

Those affected with Alzheimer’s currently number more than 5 million. An American develops Alzheimer’s every 67 seconds. In 2050, an American will develop the disease every 33 seconds, according to the Alzheimer’s Association.

In addition to Alzheimer’s, forms of dementia also include Parkinson’s, Lewy Body, frontal temporal lobe dementia, vascular dementia and others.

In Illinois, with respect solely to Alzheimer’s, 210,000 of our fellow citizens are currently projected to be affected this year, with that number growing to 260,000 by 2025, an increase of 23.8 percent.

In Winnebago and Boone Counties, it is estimated that 6,500 individuals 55 and older are affected by a type of dementia.

For many, including family members of those affected, dementia can be an agonizing medical, psychological and emotional mystery.

But it doesn’t have to be.

If your loved one requires care in a dementia-specific residential facility, make sure that socialization and visits with the family are encouraged.

This “love component” of the resident’s therapy results in what I call “family blending” and the “normalizing” of the family. Not only is this beneficial to the person affected, it also is therapeutic for family members.

There are many components of a specialized care program that must be considered and implemented properly for that program to be effective. By helping the person affected by a dementia feel that he or she is “at home” through consistent demonstrations of love by the facility’s caregivers, the residential community and family members will increase the emotional well-being of the person affected, and his or her quality of life will assuredly improve.

People with a dementia should first and foremost be defined as human beings and not be defined solely by their disease.

Love is at the heart of every home and every human being, dementia notwithstanding.